a blog about a girl with alopecia who loves the beach.
I know it has been awhile since my last post. Ok, a really long time. I wish I had sat down sooner to write, but I guess I can say I have been a little selfish. I have been in the best place I think I have ever been. I mean, honestly, when I couldn’t appreciate life even more, something always keeps me uplifted every day. To appreciate the little things, and to actually appreciate it, makes the biggest difference every minute of your day. So let me start off by a random event that had happened over the summer to me while sitting on the beach, which is my home.
So there I was, minding my own business, watching the waves, like I do every day. There was a family getting up to leave the beach, and their little boy no older then 6, runs up to me and screams “BAAALLLLLDDDDDDDD”. This did upset me, and all I could conjure up to say back was “Sssshhhhhh.” So of course, that made me a little upset. But what had actually upset me the most, is that this mother had seen her son do this, heard what he said, and just told him to keep going to the car. Never offered an apology to me, or had him apologize and explain how rude it had been to do that to anyone. For me, that shows the lack of education that is being passed down and that is what upset me the most. There was an open opportunity for you to teach your child how to act in public and give him a good example of how that’s done. But no, nothing, just told him to keep going to the car. That’s telling him that his behavior was appropriate.
For us alopecians, I think its important to be able to pass on the information of what Alopecia is. To be able to explain that there are actually about 5 million more of us in the world, would be passing along valuable information. The more people in this world that are educated about this autoimmune disorder, I think the easier it will be for the next generation to take their wigs off and feel the confidence in being the beautiful person they are inside and let that glow on the outside. There is a certain confidence that comes along with having alopecia and being able to conquer that fear of the “not normal” of being bald. Everyone is always going to complain about something, God just gave us one less thing to complain about. We will never have a bad hair day, our eye brows will always be perfect, our lashes flirty and full and legs smoother then a baby. I don’t know about you, but taking away one thing and giving us 5 more things to be happy about, seems pretty good to me.
“If you allow beauty to grow on the inside, it will radiate on the outside”
How are some ways in which you can help this beauty grow you ask? Well simple. Appreciate the small things. There really is beauty in every day. Whether it be catching the sun rise and watch the sun shine is beauty over morning with her bright colors and warmth, or watching the fall leaves change their colors while driving down the street, children playing with their families and hearing their innocent laughter, even someone else’s happy news… seriously the list goes on and on and on and on and on, if you are starting to see what I mean. I can go on forever. Another way, is positive thoughts, turn everything into a positive thought. Cos there are so many positive things out there, you can’t waste time or energy on the negative, it will take that much longer to get to the happy positive. So just stop, breathe and let the positive flow. It takes time and patience, so allow that. You will like the results. So smile to yourself, who cares who is watching.
Choice: the right, power or opportunity to choose; example: The child had no choice about losing their hair.
Sometimes alopecia puts me in between a rock and a hard place. I don’t like to complain too much about how it sucks, or how, on any given day, I hate being bald. I’m sure these are all common feelings that most of us alopecians have. Yes, that is a word. For most people, having hair doesn’t seem like the common choice to make. Everyday you take for granted that you can wash and style your own hair, never knowing that one day, that choice can be gone, one small clump at a time. With absolutely no reason, and no way of knowing when or how you can get that simple choice back. This is not limited to just the hair on your head, it continues until it takes all the hair on your body; eyebrows, eyelashes, arms and legs. For me, losing my eyelashes became the hardest part. I’m still not sure if that was because it was last, and that meant everything was finally gone, or because eyelashes are awesome. All part of what makes you a woman. You have to have those full long dark eyelashes, right? Sure, I can wear fake ones, but it will never be the same as your own homegrown eyelashes. No matter what, at the end of every day, before you climb into bed, you have to take off your wig, take off your eyelashes, take of things that you shouldn’t have to.
So, one day, there you are, looking into the mirror at this blank slate of a person. I feel like I’m still in the makings of a person. I have my body, my head, arms, legs and torso, but I don’t have the accessories to go along with it. The long curly brown hair, my eyebrows, or my lashes. That choice, alopecia stripped that all away.
I get tired of feeling the way I do some days. There are days when I don’t want to go out, I don’t want to leave the couch. On these days, there is nothing anyone could possibly say to you that will make it all better, make it all go away. On these days, you can’t even stop your thoughts from flying from on to the next. I don’t have time to stop the next one from coming and rationalize about the previous thought, and let me tell you, my thoughts can be really upsetting. Wishing that I could wake up and have hair, that maybe this really isn’t my life. Wondering why I live with this disease. Thoughts of what others think, and if other girls thank God that this didn’t happen to them.
I think one of the hardest parts about this disease is, that there is no reason why it happens, and there’s no cure. I am thankful to be completely healthy. That if my only worry for the day is about being bald, then there’s gotta be something I’m doing right. I am thankful for the friends in my life. The way that they can make me feel invincible when all I want to be is invisible. I am thankful for my family, forever my biggest fans and never judging me.
If there is one thing I know for sure, it’s that everyone like me who suffers from alopecia, we are all so much stronger for it. Everyday is a struggle, but everyday we live our lives. I know I do, and I love living each day to its fullest. Life is all about moments, so live for the ones that make you smile.
So our choice of having hair may have fallen away from us, but our life has not. Fight through the struggle and the bad days, because the sun will always shine. Smile. xoxo
Meet Ella, Mattel’s bald Barbie and my lovely sister Maddie. Maddie has Aopcecia Totalis, an autoimmune disease that causes her white blood cells to attack her hair folicals resulting in that beautifully bald head of hers. Even though Barbie isn’t the best role model as far as beauty standards are concerned, she represents the ideals of our society. My sister has so few women to look up to and be inspired by as she faces the daily challenge to love what she sees in the mirror. We all struggle to love ourselves and the majority of us have hair. Maddie is bald and beautiful, I’ve know it for years, but now so is Barbie.
This is a photo my cousin helped me with after being inspired by another amazing woman with alopecia.. Which has eventually been turned into a tshirt by a friend and sold to raise money for alopecia awareness and donated 💜 alopecia strong!
"My theory is about moments, moments of impact. My theory is that these moments of impact, these flashes of high intensity that completely turn our lives upside down actually end up defining who we are. The thing is each one of us is the sum total of every moment that we’ve ever experienced with all the people we’ve ever known. And it’s these moments that become our history. Like our own personal greatest hits of memories that we play and replay in our minds over and over again."
“the traveler sees what he see. the tourist sees what he has come to see”
I have been to some other countries and have traveled to other states. There is so much more that I want to see too. Traveling is amazing. It allows you to see the lifestyle of different countries, meet some of the coolest people and learn about their lives. Along with the most beautiful beaches and tranqiulo lifestyles. <— something I live my life by.
A couple weeks ago, I just got back from my longest trip so far. Six weeks in Central America. A couple weeks in Costa Rica and then Panama. I met up with my boyfriend in Costa Rica after he had been in Nicaragua for about a little over a month, and then continued our travel together. Words will never be able to describe the absolute beauty of what we saw, the places we had been, and the great friends we had made. I seriously can’t wait to go back!
So the main point that I want to get to, is something to remind myself when I someday eventually have kids. When they graduate high school, I want to encourage them to travel before deciding what college to go to, or what they want to become. Even though they may have an idea, or may even know exactly what career path to go down, I would love to allow them the gift of travel or choice. Whichever. It is a totally different experience that going to a different state for college can give you. You learn how to adapt in new and different situations, not only within a culture but with people from all over the world. I’ve learned so much from the friends that we made, that I never knew before. Along with some of the best times I’ll never forget, or the bits and pieces that I can put together. ha just kidding, sort of. Any way…..
If you have the chance to go somewhere different, and possibly outside your comfort zone because your not sure of the unknown. Go, do it. Put yourself out there and do something different, thats when you really learn about yourself and the person you are. There is so much more out there then only staying within the states. Everyone lives in this fast paced world without allowing themselves to step back and really watch the breeze flow through the dunes, or the way the tides change. It really is all about the little things that make you happy. I think then it is easier to see the bigger picture.